anyone decline the PKU?

[SewGreenBaby]

Originally Posted by mommyshanti sewgreen- so they give you the option to opt out of them using it but still can still opt in for nb screen I think that is great. It is good to check your state as I think some hold for longer periods of time and use them differently. aylasmommy(I am an Ayla's mommy too- $250 isn't bad. Does that test as much as your state? Ours does I think 29- chocochoco- ouch that;s rough a vial of blood vs a prick and too bad they only test for a couple and not as many as the state. did they charge per every single test? the opt-out like sewgreen mentioned sounds promising-

It's called a "Directive to Destroy Newborn Screening Bloodspot Card Following Testing" I searched for it and was surprised to find it on our dept of health website. The website doesn't mention it at all on the nb screening info page. Frustrating! This info should be readily available to all parents.

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[ChocoChoco]

Originally Posted by mommyshanti sewgreen- so they give you the option to opt out of them using it but still can still opt in for nb screen I think that is great. It is good to check your state as I think some hold for longer periods of time and use them differently. aylasmommy(I am an Ayla's mommy too- $250 isn't bad. Does that test as much as your state? Ours does I think 29- chocochoco- ouch that;s rough a vial of blood vs a prick and too bad they only test for a couple and not as many as the state. did they charge per every single test? the opt-out like sewgreen mentioned sounds promising-

Yes the vial is rough! For our second one, we will weigh heavily our options. Whether to do the same tests, what age, and what lab since we have moved this past year. They do charge per test, but our insurance fully covered it.

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[Dancing_with_Joy]

I have four children with cystic fibrosis. They will die from this disease (unless there is a miracle or a cure. And even a cure will not reverse the damage that has already taken place).
All that can be done is to pray and to try to slow the progression of the disease through daily treatments.
The sooner treatments are started, the better. Going undiagnosed, and therefore untreated, means more irreversible scar tissue on the lungs and other affected organs. Ask me how I know.

Cystic fibrosis, also known as cf, is not rare. It is one of the most common life-shortening diseases. It is a recessive genetic disease, so that its existence can "hide" in family trees. My husband and I have no known family history of cf.

I know one family that has 7 children. The first 6 do not have cf. The 7th child has cf.

I know another lady on a cf forum. This lady has cf. She and her dh wanted to have a child. Her dh had genetic testing to see if he was a cf carrier. The testing came back negative. They had a child. The child was flagged for cf via the newborn screening, and eventually was diagnosed with cf via the sweat test and extensive genetic testing. It ended up that the father was a carrier, but because genetic testing for cf usually only tests for about 500 cf mutations. The problem is that there are actually over 1500 possible cf mutations.

The newborn screening, also known as the "pku screening", screens for cystic fibrosis in all 50 states since 2010.
The cf portion of the screening was not in place when my first 3 with cf were born. They were misdiagnosed for years, and a lot of damage was done.
However, Joshua, was flagged for cf after his very first heel prick, done at 24 hours old at the pediatrician's office. He was a homebirth.
Joshua has benefited so much from receiving a quicker diagnosis and treatment.

For me, I don't care if the first heel prick is not as accurate. We do both heel pricks. The discomfort is nothing compared to the damage done by going undiagnosed.

Personally, I don't care if they keep the blood samples. I would prefer that they destroy them and that we have more privacy. However, I have "bigger fish to fry".

[Dancing_with_Joy]

double post

[Kiliki]

Originally Posted by PoshPants they can't do a DNA test with a dried blood spot, they require a vial of blood,

can you expound on what you mean by this comment?

To my knowledge, they certainly CAN and DO get DNA profiles from dried blood. Lots and lots of crimes have been solved since the scientific breakthroughs of DNA, identifying victims/suspects via DNA, and many of those have been cold cases, where the evidence has been stored for YEARS, even decades. So, obviously a vial of blood to get a DNA profile of someone is not necessary.

But it's possible that I totally misunderstand something there....

[Kiliki]

Originally Posted by mommyshanti I was commenting to homebirthmom and other posters that said they did decline it

I understand, and I was saying thanks.

[mommyshanti]

http://www.cchfreedom.org/pr/NBS_EUG...2009_FINAL.pdf
interesting read- some stuff you think that woudl never happen but actually did- eugenics and sterilization of women against their will but interesting that their is a large enough percent of parents that would agree to them storing and using test so why not inform everyone and let parents have the choices so they don't scar eoff people that actually want to test.

[Kiliki]

What are the reasons for the state even keeping the info? I don't understand why they would even do that? There's just no point. It's such an easy test to re-do if they lose it. And it costs a lot of money to store/maintain all those records... so, why?

I've only had time to half read the articles, and scan them, does it offer any reason?

[mommyshanti]

to use them for testing of course the newborn screening only needs a tiny lil punch out of the card we fill so they have a lot left to use. mw told me one time if she didn't fill up all the way they would have her re-do now i'm wondering why if they have more than enough rrrr. Just hate for them to ruin a good program by pushing it to far and scaring parents away from it. Seems like it should be illegal to to use our freaking dna w/o our permission but seems like anything goes these days in the name of science

[PoshPants]

Originally Posted by Kiliki can you expound on what you mean by this comment? To my knowledge, they certainly CAN and DO get DNA profiles from dried blood. Lots and lots of crimes have been solved since the scientific breakthroughs of DNA, identifying victims/suspects via DNA, and many of those have been cold cases, where the evidence has been stored for YEARS, even decades. So, obviously a vial of blood to get a DNA profile of someone is not necessary. But it's possible that I totally misunderstand something there....

We had to supply much more than a blood spot for DD's testing. So I don't know, why don't they do it from a drop if they can?

the labs requires a vial (or two) for most genetic tests, there must be a reason?